Aa
Post Pituitary Surgery-How did you feel?
I am new to this, but here it goes...I am 32 years old and I just had a pituitary tumor removed 3 weeks ago. I have been trying to find out how people felt after the surgery. I of course have headaches, and dizziness. But it actually feels like my head is clearer...before my surgery I couldnt seem to form a thought, I was so weak. I still have weakness but not as bad. My eyes used to hurt, and very hard to focus. I didnt have the best experience after the surgery, they didnt even give me discharge instructions. During my follow up with the O.R. nurse she finally told me that I cant sniff, blow my nose, try not to sneeze and dont hold my head down. She said for at least 2 to 3 months!! Is that for real???? I am on hydrocortisone 3 times a day, and before the surgery i was diagnosed with hypersomnia, because i couldnt seem to stay awake. I would wake up, and about 1 to 2 hours later I will fall asleep. I had to stop driving because i would fall asleep. I am more alert now, but how long will it take to start feeling normal again??? Will I ever feel normal again???
Sorry I painted such a bleak picture - I am in the midst of a pity party...
I had Cushing's disease. If you look at the pics on my profile, you will see that I gained quite a bit. Not every tumor causes that - however, acromegaly can cause some physical changes. Met a few patients just not in the network where I am in regular contact. I know my tumor changed my appearance drastically from my face to my body and I have never regained that back. I eat a pretty healthy diet (except for oodles of salt, which I need) and I track my food but more than one doc has called me a liar to my face.
I am panhypopit now too. And no one around me really gets it. My husband is pretty good - he has kept me alive a couple of times when my cortisol gets wonky low and I get too stupid to take meds because when my cortisol drops, I can't think. But the rest of my family pretty much thinks I am ok, a freeloader, and why do I sleep so much? I should exercise more, etc etc.
I had a great job where I was a manager, traveled a lot and was in a fast paced work environment - I just will never be able to do that again and it makes me very sad. I miss work and my old life and frankly no one understands the loss and just dealing with a new body, the hormones and all. I feel lucky too - I am alive, but I just won't be like I thought I was going to be.
Friends just don't know how to deal with the *new* situation. This is not unique to us pit peeps though - my cuz with cancer said the same thing happened to her so when she recurred, she spoke to me about it. People don't know how to be around us. What to say. I know my hubs is tired of the tumor talk but it seems every time we pits get together, it happens. LOL.
I had Cushing's disease. If you look at the pics on my profile, you will see that I gained quite a bit. Not every tumor causes that - however, acromegaly can cause some physical changes. Met a few patients just not in the network where I am in regular contact. I know my tumor changed my appearance drastically from my face to my body and I have never regained that back. I eat a pretty healthy diet (except for oodles of salt, which I need) and I track my food but more than one doc has called me a liar to my face.
I am panhypopit now too. And no one around me really gets it. My husband is pretty good - he has kept me alive a couple of times when my cortisol gets wonky low and I get too stupid to take meds because when my cortisol drops, I can't think. But the rest of my family pretty much thinks I am ok, a freeloader, and why do I sleep so much? I should exercise more, etc etc.
I had a great job where I was a manager, traveled a lot and was in a fast paced work environment - I just will never be able to do that again and it makes me very sad. I miss work and my old life and frankly no one understands the loss and just dealing with a new body, the hormones and all. I feel lucky too - I am alive, but I just won't be like I thought I was going to be.
Friends just don't know how to deal with the *new* situation. This is not unique to us pit peeps though - my cuz with cancer said the same thing happened to her so when she recurred, she spoke to me about it. People don't know how to be around us. What to say. I know my hubs is tired of the tumor talk but it seems every time we pits get together, it happens. LOL.
Weight is a sensitive topic for me :)
Like you, I just wanted to say that I've gained weight too. And it really requires a ton of focus for me to lose one pound. I even have a B.S. in nutrition and was a Registered dietitian.
Ease up on yourself!!! When doctors (and others) say things like that it makes my skin boil. It can be hard. I once had a doctor that I disliked so much, because of those types of statements, So whenever I meet another pitpat that lives in my area we talk stink about this one endo.
Because my feelings were so hurt, I made a little voodoo doll and wished that she would get a pituitary adenoma and blow up like a balloon. Mean, sure. But it made me feel better and i moved on.
I don't have acromegaly but i am panhypopit and deal with a bunch of medical schtuff.And yes the pituitary gland, taking steroids, being less active and hypothalamus stuff has made me a little more generously proportioned than I would like...
Most of my good friends from childhood are still in my life. And my family is supportive. But no one but a pitpat "Really" gets it.".. I had probs with my folks in the first few years that i was sick. But I kept educatiing and even started bringing my mom with me to some of my medical appts.I think that this is what really helped us, but my mom was open to it. My pops cares but does not "get it". He never will, I think.
Not everyone's folks are still alive. And some of us have family that don't care to make that effort. I have found that by being involved in forums such as this one.your fellow pitpats just get it more because they deal with some of the same stuff.
So yeah, things can be rough. But I feel very lucky to be alive , most of the time, : ) and have a decent life. It's just different than I thought it was going to be.
Hang in there-
Horselip
Like you, I just wanted to say that I've gained weight too. And it really requires a ton of focus for me to lose one pound. I even have a B.S. in nutrition and was a Registered dietitian.
Ease up on yourself!!! When doctors (and others) say things like that it makes my skin boil. It can be hard. I once had a doctor that I disliked so much, because of those types of statements, So whenever I meet another pitpat that lives in my area we talk stink about this one endo.
Because my feelings were so hurt, I made a little voodoo doll and wished that she would get a pituitary adenoma and blow up like a balloon. Mean, sure. But it made me feel better and i moved on.
I don't have acromegaly but i am panhypopit and deal with a bunch of medical schtuff.And yes the pituitary gland, taking steroids, being less active and hypothalamus stuff has made me a little more generously proportioned than I would like...
Most of my good friends from childhood are still in my life. And my family is supportive. But no one but a pitpat "Really" gets it.".. I had probs with my folks in the first few years that i was sick. But I kept educatiing and even started bringing my mom with me to some of my medical appts.I think that this is what really helped us, but my mom was open to it. My pops cares but does not "get it". He never will, I think.
Not everyone's folks are still alive. And some of us have family that don't care to make that effort. I have found that by being involved in forums such as this one.your fellow pitpats just get it more because they deal with some of the same stuff.
So yeah, things can be rough. But I feel very lucky to be alive , most of the time, : ) and have a decent life. It's just different than I thought it was going to be.
Hang in there-
Horselip
You made reference to diet & exercise - why? Did you gain weight? Lose? I work for Weight Watchers. One of the things I had problems w/was weight gain & it wasn't from anything I was doing wrong - I would gain weight & not be able to lose it. After my surgery the weight started going down fast. After 13 pounds down it has stopped & I'm at a standstill again. My endo when I first went to her told me i needed to stop eating so much - I was insulted. I have followed WW for 34 years - my weight gain was not from eating. I counsel people how to get rid of weight - it stopped working for me.
You have painted a bleak picture of life w/acromegaly. Why don't you have any friends left?
You have painted a bleak picture of life w/acromegaly. Why don't you have any friends left?
1 Comments
hi iv always been about 7 and half stone but since my tumor started to grow last 12 months iv put on 2 stone and its not through eating im just praying now its removed my body goes back to how it was,i no its the last thing I should worry about x
It is good you reached out. Hormones make us a mess. I know that post op I have recovered a bit and *look* better, but my tumor left me with a lot of hidden damage and I am on disability. Most of my friends (the few I have left) and family cannot understand - of course this is after years of telling me to diet and exercise.
The tumor itself has impact on hormones and that makes, in most from what I know, for foggy brains. Post op it can and does get better but I must say that a lot of us don't get 100% back - it is a percent and that percent can vary from a lot to a little depending on length of illness to severity etc.
This disease took a long long time to creep up on you and it is going to take a while to recede as well - so as frustrating as it is, it is not one where you have surgery and come out on the other end like a new person. Bleah... I wish! You need a lifetime of monitoring and may need changes to the hormones you replace, and other hormones may need to be added.
Pretty much my support system is only people that are in my same boat - aka other pit people.
The tumor itself has impact on hormones and that makes, in most from what I know, for foggy brains. Post op it can and does get better but I must say that a lot of us don't get 100% back - it is a percent and that percent can vary from a lot to a little depending on length of illness to severity etc.
This disease took a long long time to creep up on you and it is going to take a while to recede as well - so as frustrating as it is, it is not one where you have surgery and come out on the other end like a new person. Bleah... I wish! You need a lifetime of monitoring and may need changes to the hormones you replace, and other hormones may need to be added.
Pretty much my support system is only people that are in my same boat - aka other pit people.
Thank you for saying that. I am not dealing well. This fogginess has really got a hold on me. Surgically I think I am healing quickly but hormonally I think I am a mess. I've been crying quite a bit today as I am doing right now. It's not helping my sinuses any. I don't like feeling foggy. Part of it is anesthesia but I have had a problem with fogginess periodically through mty life. I thought once the tumor was removed I'd never have to deal with the fogginess again. We thought it was related. Back to square one I guess :-( It's so disappointing. Maybe once the fogginess from the anesthesia is gone and I go to the endocrinologist & get the hormones tested things will be different - I can only hope.
I believe D1 is DI - diabetes insipidus. Water diabetes. It can be a temporary complication after surgery where the hormone ADH gets wonky and the body cannot regulate fluids so the person is thirsty but the fluids are immediately passed.
Some surgeons allow saline, some do not. It is just the philosophy of the surgeon. The steam should be ok. I was also advised a humidifier is fine - it goes without saying all this has to be super clean.
Sinus rinses are not great. I had a huge infection after my surgery and had to be re-opened surgically then use a water pik to rinse my sinus twice a day. My hubs said the screaming bothered him as well as that I had to show him the giant scabs (that is the story I am sticking to) that came out.
I was not allowed to use steroids (as in the nasonex) - but then again, my tumor was a steroid producing type. I had enough of that.
Foggy - post anesthesia and major surgery... give yourself a break. It takes time to get back to yourself. You are still healing!!! It can take a few weeks to a month for surgical healing, hormonal is another story - that is longer and varies. Not sure for your tumor not experienced with those patients - but it takes a while longer than surgical typically for most.
Some surgeons allow saline, some do not. It is just the philosophy of the surgeon. The steam should be ok. I was also advised a humidifier is fine - it goes without saying all this has to be super clean.
Sinus rinses are not great. I had a huge infection after my surgery and had to be re-opened surgically then use a water pik to rinse my sinus twice a day. My hubs said the screaming bothered him as well as that I had to show him the giant scabs (that is the story I am sticking to) that came out.
I was not allowed to use steroids (as in the nasonex) - but then again, my tumor was a steroid producing type. I had enough of that.
Foggy - post anesthesia and major surgery... give yourself a break. It takes time to get back to yourself. You are still healing!!! It can take a few weeks to a month for surgical healing, hormonal is another story - that is longer and varies. Not sure for your tumor not experienced with those patients - but it takes a while longer than surgical typically for most.
Have an Answer?
You are reading content posted in the Brain/Pituitary Tumors Community
Here are 15 ways to help prevent lung cancer.
New cervical cancer screening guidelines change when and how women should be tested for the disease.
They got it all wrong: Why the PSA test is imperative for saving lives from prostate cancer
Everything you wanted to know about colonoscopy but were afraid to ask
A quick primer on the different ways breast cancer can be treated.
Get the facts about this disease that affects more than 240,000 men each year.
